The Vista Diaries

It used to be, when V got sick I would take to the Twitter and Facebook to get advice, support, and sometimes a much needed dose of reality.

But lately I find myself turning inward more and broadcasting less.

Everything is put aside so I can focus on Vista and what she needs to get better.

This past week has been a perfect example of that.

V’s been sick again. Starting with a bad case of croup, and then spiraling down into an asthma flares and other complications.

We’ve been logging the hours at the ER and Children’s hospital (where they wanted to admit her, but there weren’t any beds available. -1 for free healthcare).

And through all that, I’ve been much quieter than normal. Except for a few of my closest friends (who I had to cancel plans with) and a couple clients (who I had to explain why I wasn’t getting any work done), no one has really known the extent of V’s condition, this go round.

I couldn’t really say why. There was no concious thought to not let everyone know how she’s doing.

It was more just the need to spend the time taking care of her, mixed with a healthy dose of exhaustion.

Thankfully she seems to have turned a corner and maybe now that I know that she’s on the upswing I feel better about putting out updates.

We still don’t fully know what’s going on with her. But we’re working on trial-and-error meds to see if anything will help and if not we’ll get a referral to a pulmonary specialist.

Mommy instinct (which never fails me) tells me that there’s something more going on and we’ll need that referral. But we’ll play the game, and try the meds, and then I’ll gear myself up for another battle for my daughter’s health.

Back to school and back to blogging. I feel like I can be excited about writing again.

I decided to take the summer off to just enjoy the sun, hanging with V, and take time to recharge. It was something I needed. Time to reflect and just….be.

But lots has happened since June.

So here’s a 3mth update:

In June we were worried about V getting for an aide for school this fall. She was doing really well and if she scored too high on her assessments she wouldn’t qualify for that assistance, even though we still knew she needed it to some degree. Turns out we didn’t need to worry. She only scored 5th percentile or below in all her testing. Her fine motor scored less than 1st percentile because of severe behaviour issues during the testing.

Those test results were a bit of a sucker punch. We had watched her improve so much through the year. But we didn’t take into account the growth and improvement that is natural and expected of a kid her age. So, when you factor that in, she’s still sitting about a year behind in her skill set.

Except for reading and computer skills. Those are off the chart. The school has asked for permission to test her reading again when school starts to get a gauge of them. Last fall at the age of 4 she was reading at a solid grade 2 level. They think her level now that she’s 5 is closer to a high grade 3/4 level. Which scares the hell out of me. I was an early reader too, but she’s way beyond where I was at her age.

At least we don’t have any worries about her alphabet skills going into kindergarten.

July was project month. Which including building this behemoth in the backyard.

We started off trying to build it ourselves, with the help of some friends.

Then we got real and called in the experts (aka: My dad and a couple of his buddies).

Without them, I can safely say that swing set would still be a work in progress.

We’re very glad we bought this though. It has an angled ladder with a handle, which allow’s V to climb up on her own. (she can’t manage the more vertical ladders that are on many slides at playgrounds). And having swings in our backyard has really allowed her to work on her core strength and balance. Yay for play that acts as therapy!

We also got her a new wooden playhouse because her old plastic one was too small for her (can we say major growth spurt?). Bil and I built that one ourselves. I won’t show you pictures, though, because it’s a wee bit crooked. I blame warped boards for that. It has nothing to do with our complete and utter lack of building skills.

August was an awesome month. We paid off all our debt (except for the mortgage)!! YAY!!!!

That was an amazing feeling…. for the whole week it lasted.

Because then we went out and bought this:

But we’re super happy to have bought this. We got an awesome end-of-summer deal on it and we’ll have it paid off by the spring.

It means we can actually take camping TRIPS with V, rather than short excursions close to home. This allows us the flexibility of making her meds while we’re on the road and also give us the security of having a power source in case we need to use her nebulizer.

We’re already saving up for a camping trip out to Vancouver Island next summer. Can’t wait to show V the ocean!

And that brings us to September!

School starts tomorrow!! (Me, excited? Naaaaaah)

V has her aide from last year back again, which we’re thrilled about. And now we just wait and see how she handles the first day back!

We have been trying, in vain, to potty train Vista for going on a year now.

To say she’s not on board with it is putting it mildly.

Some days she does great. But we have to be constantly on her, reminding her to go to the bathroom.

And then the arguments start.

Like tonight.

Bil was doing the bedtime routine and part of that is getting her to use the toilet before getting her pj’s on.

He took off her diaper (which was dry – yay) and told her to go pee on the potty.

V: “No.”

Bil: “Vista, just go pee on the potty.”

V: “No. I don’t have to go pee.”

Bil: “Well, just TRY.”

V: *starts sobbing* “No, because I peed in my diaper…”

Bil: “What? No you didn’t. It was dry. Now go pee on the potty.”

V: *still sobbing* “Then what was that pssssssss sound?”

Bil: *completely bewildered* “What pssssss sound?”

V: “The pssssss sound…. It was the sound of me peeing in my diaper” *cue a fresh round of sobs*

(the kid needs an Academy Award. She can make herself cry at the drop of a hat)

Bil: “Vista…. you did not pee in your diaper. It was dry. Now GO. PEE. ON. THE. POTTY.”

V: “Then what was that psssssss sound? It was….”

Bil: “No! There was no pssssss sound. Your diaper was dry. GO PEE!”

V: “But I don’t have to pee. I peed in my diaper!”

Bil: “You. Did. NOT. Pee. In. Your Diaper. It was dry. If you peed in it, then what happened to the pee? Did it just vanish?”

V: “Yes! It vanished! …… Wait…What’s ‘vanished’ mean?

Meanwhile, I’m sitting in the living room listening to this go down. By the end I think I was laughing so hard I just about peed myself. Hmmmmm…Perhaps I’m not the best person to be trying to potty train my kid after all.

So yeah… about those floors. I wrote last month about pulling up our carpet and putting down laminate. And then all hell broke loose.

But the floors are done! (YAY).

Here was our living room before.

Beautiful beige carpet.

But then we did this.

For the record, I hate ripping up carpet almost as much as I hate painting. Carpet staples are the debbil.

Vista didn’t react well to all the dust stirred up and so went to stay with my parents for a few days while the actual flooring installation was being done. And it’s a good thing, because despite the effort to poly everything and keep things as clean as possible, laying down new floors creates a dust storm in your house (ie. don’t install new floors if you have any OCD cleaning issues).

This was our first glimpse of the new floors. Notice the lovely layer of dust on top. But I was still thrilled with how they came out. Even though it’s laminate, it has a hardwood look. And I’m so glad we went with the wider planks.

So after they were done the floors we washed and scrubbed and vacuumed the best we could before bringing Vista back home.

We managed her asthma and the effect the dust was having on it OK until the guys came over that next Monday to finish the stairs. The little bit of dust it created was just enough to send V over the edge and necessitate a nice little ambulance ride to the hospital.

We knew we couldn’t bring her back to the house after that until all the dust had died down and we had thoroughly cleaned everything. My parents were gracious enough to let Vista and I stay at their place for the week. Let me tell you, being back in my childhood room and sleeping in there with my daughter was weird.

We were contemplating going home Thursday morning when Vista informed us her ear was bugging her. V’s not ever the type of kid to complain that something hurts, so when she does we tend to take it pretty seriously. She complained just enough to get me to take her into the clinic and after that she never said a word about her ear hurting at all. But the doc at the clinic confirmed a bad ear infection. But then he listed to her chest and gave me one of those ‘doctor’ looks. Apparently she had one heck of a wheeze still going on.

So we ended up a my parents a few extra days while Bil did some extra cleaning and V got a few more days of antibiotics and steroids on board.

Since we’ve been home, she seems to be OK. But the floors are a bit of an adjustment.

Vista’s done a few slip and slides while trying to lean on the couch.

Our border collie is fine with the laminate (although he was very happy to have V home again).

My shepherd, however, hates the new floors, preferring now to reside in the front entryway or V’s play tent when she brings it out.

(I think the pink brings out his eyes).

So, yeah. It’s been an adventure. Nothing could ever be simple, not even putting in new floors.

But I am so glad we had them done (and SO glad we didn’t attempt to do them ourselves).

I’m thrilled with how they look. Now, I just have to get those walls painted… and redo the tile on the fireplace… and paint the kitchen…and… win the lottery evidently.

Three and a half years ago we began our foray into the special needs world. Our steps were slow and tentative, not knowing where this path would take us.

One of the first families I met was Tasha and her daughter Jenna. I still remember walking into the physio room at the Children’s hospital in the city and seeing the halo of blond curls that is Jenna’s trademark. We had no idea, then, that our girls would become fast friends.

A few months later I walked into the building where the local physio/support group for special needs kids was being held in our small town. I was surprised to see the familiar blond halo of curls there. I had no idea that Tasha and Jenna lived out in our area, since we had first met them in the city, but it was reassuring to know at least one family there.

Over the years the girls have grown together. We’ve watched them learn to walk, learn to talk, learn to run, and learn to get into enourmous amounts of mischief for two little girls who look so innocent.

They started preschool together last year, happy to play with the other kids in the class, but also happy to sit and hold hands together during circle time.

As the girls became friends, so did Tasha and I. A bond formed over diagnosis’s, doctors, and treatment plans. It was comforting to have someone I could compare notes with, commiserate with, and celebrate the milestones with.

For the past few years, Tasha’s mom has run our special needs group. She is the rock we all turn to. And Vista knows her as Grandma. She is as much family as anyone we’re related to.

Tasha’s boys go to the same school as Vista. They’ll always stop to say hi to her and give a little brotherly hug.

Tasha and her family have become an important part of our world.

But that world was rocked when Tasha’s daughter ended up in the hospital on last Friday.

A hospital stay for Jenna, in and of itself, is nothing unusual. But it was quickly apparent that this wasn’t going to be her normal get-sick-crash-bounce-back routine.

Since last Friday, Jenna has been in the ICU at the Children’s hospital. She’s on a ventilator. She’s flat-lined several times and been resuscitated several times. And everyday seems to bring a new round of complications. Pneumonia, hMPV, bleeding in the lungs, pulmonary hypertension, sepsis, low hemoglobin, the list goes on and on.

Jenna is a fighter, but she is sick. So very sick right now. And no one is sure if her little body can stand up against the onslaught it’s under.

So if you have a moment, could you send some good thoughts, positive vibes, and prayers their way?

They have a long road ahead of them and they could use all the support they can get.

She’s smart. Waaaay too smart. And she knows exactly how to play people.

I watch her do it with her therapists when she’s not in the mood to work with them. She’ll play dumb, bat her eyelashes, cock her head to the side, smile, and give a ‘I don’t know’ shrug. At which point we’ve now trained her therapists to glance over at me, where I can give a slight nod to indicate ‘yes, she knows this. She’s just fucking with you right now.’

The other day she was throwing a fit while getting ready for school. It was only 7:30am and I had already had it. So I looked at her and told her to drop the attitude. She stopped, cocked her head to the side and gave me the biggest smile. In return, I rolled my eyes at her. “Nice try. That might work on some people, but it doesn’t work on Mama.”

Without missing a beat, she let the smile drop and told me, “It works on Daddy.”

*snort*

Yeah, my kid’s no dummy.

This morning she was being a typical four year old, running around and not listening to a thing we had to say. After 5 hours of this, Bil was understandably tired of it and told her “Enough. You need to start listening to Mommy and Daddy. You haven’t been listening at all this morning!”

Again, without missing a beat, she turned to him with a straight face and asked him “Why do you think that is?”

Vista is slowly coming down from the two weeks of oral steroids she was on over Christmas for her asthma. It’s hard to say when she’ll be back to ‘normal’. But it’s definitely showing in her behaviors.

Her teacher commented on it at preschool on Monday. When ever one of the kids would approach her she would scream and throw a fit (see: How to win friends and influence people).

Aaaaand that would be why we’re thankful she has an aide in class with her. To deal with the situations like that.

At home, though, there’s no aide. Just us. It makes for some long days. Add the fact that the steroids interrupt her sleep patterns and you have long nights too. And I’m one of those people who NEEEEEED to sleep. I love my sleep. I covet the sleep I used to get pre-kid. Lack of sleep = very cranky Jenn.

And that in a nutshell is why I haven’t been on the interwebs lately.

Cranky kid + cranky parents = not fit for human interaction.

But we’re slowly getting back to normal around here. Whatever normal means. If someone figures that out, let me know.

It’s hard when you’re trying to discipline your child by telling her that she’s lost TV privilages for the rest of the night and she helpfully suggests you should take away her dinner too.

*headdesk*

Trying to figure out a way to discipline a special needs kid who is completely oblivious to the fact they’re being disciplined? Well, lets just say it’s an exercise in futility. No matter what you say or do, there’s only one loser in the situation and it’s ALWAYS the parent.

It’s hard not to get even more frustrated trying to get them to understand they’ve done something wrong, when it’s obvious they have a complete lack of understanding around the entire situation.

Sometimes it makes me wonder if my kid will grow up to be a complete sociopath. How can you have remorse when you don’t get that you’ve done anything wrong?

All this came up today after she purposely broke another one of her toys. Why? Because she didn’t want it anymore.

This is a common occurrence and it frustrates us to no end. We’ve tried to explain to her that if she doesn’t want to play with a toy, that she can bring it to us and we can give it to another little boy or girl who doesn’t have toys. But that hasn’t yet sunk in. We’ve tried making her throw the toy out after she’s broken it, but she’ll happily do it. She just isn’t that attached to anything.

And midway through the discussion on why she broke her toy, she burst into hysterics because she wanted her old white bed back. Yeah. Six months after we redecorated her room and moved her into a big-girl bed and we’re still experiencing fallout from it.

Oy. There are days when being a special needs parent is, well…special.

Vista’s doing well in pre-school. She still has her aide with her and I really think that’s made all difference. There are still challenges though. There always will be. But there easy to forget when your kid brings home school pics that look like this:

We’re still waiting to find out when her spinal MRI is. If we get it by next summer, I’ll be thrilled. In the mean time we have to check in with the doctor once a month so he can check her reflexes to see if they’ve magically returned.

We’re still waiting on results from genetic tests too. It’s been a year and a half. They’re telling me it could be another year still. Two and a half years for one test. Awesome.

I’m finding when you’re a parent of a special needs kid that patience is a virtue. It just doesn’t happen to be one of MY virtues.